A Quick Thought

I worry that I make my life sound grimmer than it is. A physician friend, a cancer survivor, sent an email commenting on shutting loved ones out It occurred to me I am casting myself as a loner, some wizened old mountain man with a white beard, living in an inaccessible place. My references to my cave probably have not helped dispel the notion,
Actually, I am not a creature of central casting. If I am making myself into a caricature, I apologize. I do not mean to be misleading. Believe it or not, I am fairly normal. As has been discussed on this blog, I do live in my head. How I sometimes see myself bares no necessary resemblance to what I appear to be in the eyes of others.
Everything I have written about my frustrations is true. You know that because so many of you share them. So this becomes a matter of perspective. Do I sit around with Meredith, beating my breast over my misfortunes? Hell, she’d be on the last train to Georgia. Writers can get carried away with their own words. It is all a matter of degree.
Please understand, I do not intend to overstate. As I attempt to make what I put together compelling, do I milk it? Good question. Journalists frequently push a point of view, whatever is said to the contrary. But keep this in mind. Disease dampens the spirit. Our collective mission should be to block diseases from extinguishing our brightest light.

53 Responses to A Quick Thought

  1. Elizabeth July 18, 2014 at 10:06 am #

    Richard what I love about this blog is that it is real, sometimes humorous, sometimes dark, but always real. Even if you are pushing the limits, you are an artist, who would deny you your craft? If you can’t have that then what’s the point. I believe that the “I can beat this” campaign is great for people who need that to push through every day life without getting overwhelmed. But it has also led people to believe that MS is not as bad as it used to be. You read that DMTs are changing the game, not everyone ends up in a wheelchair, yadda yadda. It leaves an unrealistic opening for family, friends, employers, etc., to think that we’re not as sick as we are. Don’t we wish? There are enough places to find info about how bad MS isn’t. Thank you for shedding the light on how crappy and defeating it really can be. The truth is the light for me. Is our idea of ourself ever what others see? I doubt it. Also, I hope you don’t mind me saying this. You are probably financially better off than most of us. I think it’s important to see that you can’t buy your way out of this disease. At least not yet. Write on good man.

    • Richard M. Cohen July 18, 2014 at 10:40 am #

      Thanks.

      As the Beatles once sang, “alll your wealth wealth won’t buy you health.”

      R.

  2. Kevin July 18, 2014 at 11:28 am #

    As everything in life its a matter of perspective. Do I look up the mountain from the base or down from the peak? Im 45 former marathoner and triathlete. Last year i gave in to the need for a wheelchair after one too many falls. This past winter my wife divorced me and my thyroid took the remaining energy i had and used it to burn 40 lbs i really needed.

    I look at Richard and say wow he can walk with a cane to meet a friend at Grand Central station. I used to go there for martinis and oysters at the Oyster Bar. We live 24/7 with the pain and suffering inflicted upon us for winning this perverse genetic lottery but i see no value in reading about how miserable this disease makes others. Clearly im different than most here by not enjoying the misery layer cake created here. How does it help to see the “real” feelings of others? For me it doesn’t.

    I refuse to lose because when i do i will check out, check please thank you!

    Maybe Sadiq’s cells will work from the bottom of the spine or maybe its Goldman’s in Rochester through the brain. Its out there somewhere and most likely none of us will benefit from efficacious regenerative therapies but i prefer to surround myself with the little free time i have reading about whats coming itomorrow instead of whats here today.

    Namaste

    • Yvonne July 18, 2014 at 5:56 pm #

      Kevin-This is probably not the blog for you based on your perspective of the post here but I encourage you to keep peeking in because this is not misery you see. This is triumph we speak of when we fall and get up to try again. Finally finding somewhere that celebrates little victories when we all know the big victories may never come for us. We all hope, just on the edge of reality. Namaste Kevin. We welcome and validate all experiences here. (Voyeurism is accepted) 😉

    • Richard M. Cohen July 18, 2014 at 8:13 pm #

      Thank you. Painful perspective but very real.

      Best,
      R.

  3. Linda Lazarus July 18, 2014 at 11:34 am #

    Thank you Richard…
    Thanks for giving us a place to be cranky.
    I am so damn tired of being positive all the time…of people expecting sunlight and happiness and that damn “I have MS but it does not have me” attitude.

    This blog is as good as a gin and tonic!

    • Richard M. Cohen July 18, 2014 at 8:15 pm #

      Good, perhaps, but not that good.
      I despise sunny.

      R.

  4. Sandy July 18, 2014 at 11:58 am #

    Hey Linda,
    Whataya say tonight we try the blog AND a gin and tonic.

    I find the people in those MS drug ads really annoying. Seriously they ride bikes and go hiking! And they must also go shopping a lot because they are always well dressed. Gotta be actors each and every one.

    Every so often in find myself trapped in a conversation with someone who has just learned about my MS. My favorite are the ones who say something like, “My friend does the MS walk. Do you do the MS walk?”

    “Everyday” I say, “Everyday.”

    I am like Wendy, I am generally happy and try to find humor in all things. That was my personality going in and I cling to it. If I cant laugh at myself I know there will be a line of folks waiting to do it for me.

    So I laugh even when I fall. My dogs know that dog spit is the best cure for a fall and they give me the treatment as often as I need it. Works great. I get right back up.

    Richard I am glad to know that you spend more time at the top of your game than at the bottom. But if we did not have both extremes how would we know when good is really good?

    I find you honest, genuine and inspiring.
    Sandy

    • jeanne July 18, 2014 at 12:31 pm #

      Its only 9;30 am here but its cocktail hour somewhere! Cheers!

      Grandma

    • Jack July 18, 2014 at 4:27 pm #

      DITTO! Well said.

    • Richard M. Cohen July 18, 2014 at 8:19 pm #

      Sandy-

      I love your rough edges. Keep on truckin’.

      Best,
      R.

  5. jeanne July 18, 2014 at 2:30 pm #

    Richard,
    If tomorrow could be your perfect day,what would it be like?
    Grandma

    • Richard M. Cohen July 18, 2014 at 8:23 pm #

      I would drive to a tennis court and play my heart out. Then meet up with Meredith and climb a steep hill. If there was anything left, Wewould jog s few miles and swim to an island as the sun went down.

      I have not done any of those for years.

      • jeanne July 18, 2014 at 10:18 pm #

        Richard,
        can you and Meredith take one week to fly to an island, sit under an umbrella, watch the sunset and drink fruity drinks this summer? Than you can come back and tell us all about it. Maybe you could be cranky because you had to come back

        Grandma

  6. Yvonne July 18, 2014 at 2:36 pm #

    I have never seen anyone on this blog wallowing in misery on this blog. Everyone here recounts their experiences both good and bad. I find it so this blog so relatable compared to some of the others which can be either too clinical or too “the sun will come out tomorrow” like the story of the Three Bears, this fits just right. Richard you are honest, satirical, cranky and brilliant. There is nothing wrong with delivering a message that is not always good news. Keep it coming. Depression be damned!!

    • Richard M. Cohen July 18, 2014 at 8:26 pm #

      If not honest, then why bother?

  7. Amy Corcoran-Hunt July 18, 2014 at 3:40 pm #

    Terribly depressed, but it’s nothing they make pills for. Anti-depressants don’t change reality. How cool would that be.

    I got the diagnosis, did everything right, and in 5 years I was hurled into a wheelchair and my dominant right arm and hand don’t work. Hard not to be very sad and spitting mad. No big pharma company wants to spend time on helping me, primary progressive is a sliver of the market. Me and my kind aren’t worth billions. So it sit here (yes, always sit) thinking about gluten maybe.

    Not every day is like this, but sometimes days are. I have nothing nice to say about PPMS today. My life as I knew it is gone, and something unrecognizable has risen up in its place. Working on it. Check me tomorrow.

    • Richard M. Cohen July 18, 2014 at 8:29 pm #

      Nothing to add. I am sorry fo allll of us.

      R.

  8. jeanne July 18, 2014 at 4:13 pm #

    I was diagnosed in 1995 and I needed to take Zoloft for about 6 months. It helped and I have never needed to take it again. My granddaughter was diagnosed some weeks ago and has started Prozac. Right now she is happy with her job,biking,camping,hiking and swimming and able to sleep all night again without pain.She also takes edible marijuana and no other drugs. Tomorrow or next week or next month might be different but today is ok for her so I’m happy!

    Grandma

    • Richard M. Cohen July 19, 2014 at 8:45 am #

      Grandma-

      That iis terrific Sounds like she has her act together. Attitude. Criical.

      Best,
      R.

  9. Louise July 18, 2014 at 4:29 pm #

    Well Grandma, you just did me in for the day. The one thing I cannot stand to read is children or grandchildren being diagnosed. I have accepted this for me, but please please please not my kids.

    • jeanne July 18, 2014 at 6:30 pm #

      Please Louise dont worry about your children! My family has many many members on my mothers side with a neurological disorder and I’m positive we have a defective gene. Your kids will be fine!

      Grandma

  10. MB July 18, 2014 at 5:20 pm #

    I can see why you wrote this blog post because after reading the comments from your last few, I was starting to think that Richard M. Cohen was a pseudonym for god. And since I don’t believe in a supreme being, I was starting to worry…

    Today’s comments to your post reminded me of another reason I follow your blog. In addition to reading your well-written, truthful, and from the heart and head writing, I feel that a lot of your followers experience the same frustrations and worries that I do. While I hate that anyone feels this way, it’s somewhat comforting to know that I’m not alone. We’re all doing an admirable job of living even though we’ve been dealt a crappy health hand.

    • Richard M. Cohen July 19, 2014 at 8:53 am #

      I am just one of you, except I talkj too much. Trust me. I never have been mistaken for God, who does not hang around here anyway.

      R.

  11. Betty July 18, 2014 at 6:31 pm #

    For The Journey

    Hold on to your egos. Remember who you are, where you’ve been, what you’ve done; and manage what you still have to do if you choose to do so. Honor that you once did have a career, raise children, run, and dance, and drive fast cars. Maybe you still do? On the days, or in the moments when your symptoms subside, revel in it; and even if they don’t, do something, or think something that makes you feel better. Repeat this paragraph.

    Nobody comes out of this life unscathed. Many people for infinite reasons never get the chance to do the things we miss the most, nor can they even hope for a future. A fit, feisty 62 year old colleague of mine is in late stages of Frontotemporal Dementia. Heartbreaking.

    This blog is a Godsend. It brings me truth and equanimity when I need it most. Thank you Richard, and all who gripe and groan and cheer and share, and even to those who read here, but don’t write (yet). You’ve found a place and people who understand your passage.

    • Richard M. Cohen July 19, 2014 at 8:58 am #

      We are a community of people who care about themselves and each other. I sit alone at a computer but see faces.

      Best,
      R.

      • Betty July 19, 2014 at 9:23 am #

        Crazy thought, but then again we were going to rob a bank.
        Should we come out of The Cloud, loud and proud? Show ourselves and tell our stories, or does this take away from the sanctity of our place here with Journeyman? I can imagine it. ‘Travelers’. A documentary? Facebook page? Reality TV ? The Journeyman’s communal channel/s for living with chronic disease. Who’s in?

  12. Sarah July 18, 2014 at 6:54 pm #

    Richard,

    You always seem to be thinking what I’m thinking or have already thought. Your honesty always makes me smile, for better or worse. I love when a person can convey their thoughts so clearly, even though they may not feel like their functioning clearly. And you definitely have that gift – thanks for sharing it with us and don’t change a thing!

    • Richard M. Cohen July 19, 2014 at 9:01 am #

      To all: keep sharng with each other.When I leave to play with the Green Bay Packers, this blog must live on.

      R.

      • Sandy July 19, 2014 at 6:02 pm #

        I am a rabid Packers fan. Dont worry if you cant run down the field. We have lots of players who cant do that. Dont worry if you fall down…again…guys do that all the time. Just do me a favor and hang onto the frickin ball will ya? IF you catch it just hang on to it. Go ahead and fall down on the spot. Just hang on.

        Learn to love grilled brats, beer and deep fried cheese curds. Mmmm.

        Once we do the bank heist we will all be rich and we can get a nice luxury box and watch you play.

        What will we call ourselves? Cohen’s 11 or 13?
        Sandy

        Sandy

  13. jeanne July 19, 2014 at 9:51 am #

    Green Bay is too cold. How about Seattle? Go Seahawks!

    Grandma

    • Richard M. Cohen July 19, 2014 at 5:13 pm #

      We have a son in Spokane. Vikings fan. Go figure.

  14. Mark July 19, 2014 at 11:10 am #

    I would have to be drafted by the NY Giants…..no offense intended….not sure about the pun, though. I need a nap. All this reading has exhausted me. Great exchanges! How will the blog continue if Richard goes to Green Bay?

    • Richard M. Cohen July 19, 2014 at 5:16 pm #

      They are thinking of trading me to the Girl Scoouts.

  15. Sarah July 19, 2014 at 12:15 pm #

    Sorry Richard, the Packers are gonna have to wait. Don’t we have a bank to get to first?

    • Richard M. Cohen July 19, 2014 at 5:17 pm #

      There is money in Green Bay.

  16. Bill Garcia July 19, 2014 at 3:46 pm #

    I LOOK FORWARD TO EACH QND EVERY POST. IT ALLOWS ME TO ESCAPE MY REALITY. THOUGH MY REALITY IS NOT ALL THAT BAD I OFTEN NEED AN ESCAPE. LIFE HAS A WAY OF GETTING IN THE WAY OF LIVING WITH MS. WHAT TROUBLES ME MOST IS MY WIFE STILL DOES NOT UNDERSTAND HOW BRUTAL THIS CAN BE. YOU SHOULD BE THANKFUL THAT MERIDETH DOES. I AM MAKING AN ASSUMPTION THERE.
    SO PLEASE KEEP WRITING TO ALLOW ME TO ESCAPE IF ONLY FOR A FEW MOMENTS. I NEVER ONCE BELIEVED YOUR LIFE MIMICKED (sp) YOUR WRITINGS. YOU WRITE WHAT IS IN YOUR HEAD AND THAT IS A GOOD THING BECAUSE THAT IS WHERE OUR FEELINGS RESIDE. SO BLOG ON!!

    • Richard M. Cohen July 19, 2014 at 5:21 pm #

      Will do. Thanks for the caps, but they do not work. The font is in good shape now.

      Best,
      R.

      Meredith does get it.

    • Grandma July 20, 2014 at 1:26 pm #

      Bill, when I felt that certain family members didn’t understand how brutal ms is I told myself it was because they loved me so much that they didnt want to think of me suffering. Maybe it’s true. Is this solipsism?

      Grandma

  17. Nik July 19, 2014 at 5:53 pm #

    You are all like a new family to me. Everyone understands here. And Richard, no Greenbay whatever they are (big football fan here, can you tell?) . You better be here for a long time.

    • Richard M. Cohen July 19, 2014 at 7:50 pm #

      Promise.

      Best,
      R.

  18. Mark July 19, 2014 at 6:07 pm #

    I agree, Nik. I find myself checking in a couple times a day now!

  19. jeanne July 19, 2014 at 7:23 pm #

    Richard, you’re blog is like continuing education for me. All these intelligent ,educated people make me feel like my brain is still working even though I’m probably the only one who had to google “solipsism” and I had no idea who Sisyphus was. Live and learn

    Grandma

    • Richard M. Cohen July 19, 2014 at 7:51 pm #

      We all live and learn.

      R.

  20. Yvonne July 19, 2014 at 8:28 pm #

    Grandma-you are not alone. Many of us are either googling what we’ve just discovered or what we long ago forgot. Haven’t thought much about either philosophy or Greek mythology in 30 years. This blog has given me a great refresher and perspective of both. So thank goodness you folks exist even if it is just in my mind 🙂

  21. Desinie July 19, 2014 at 8:43 pm #

    There are many of you who I read in these comments who are so articulate that you should be having your own blogs as well. Richard helps me to keep going with my battle with his words for sure, but so do all of you fellow readers of his blog. We’re in this together.
    If we can be thankful for anything, let’s all be thankful for the internet and every one of our family, friends and even our pets that are there for us in our journeys every day.
    I need to reiterate what someone else said in the comments on more than one occasion. ” I have MS; it doesn’t have me.” has been one of the least helpful quotes of my MS life. I’ve come across so many other quotes and meme’s on FB that have inspired and helped me much more in this relentless fight.

    • Richard July 20, 2014 at 10:23 am #

      Right about that stupid quote.

      I have sad all along, this blog is about you and your collective wisdom. How do you know I even exist?

    • Joan July 20, 2014 at 10:48 am #

      How about “what doesn’t kill you makes you stronger” for overused unhelpful quote? I have a friend who says, no, “what doesn’t kill you just doesn’t kill you”. Makes more sense to me!

      • Richard July 20, 2014 at 3:37 pm #

        How about, wherever you go, there ou are.

  22. jeanne July 20, 2014 at 11:07 am #

    I always hated “There but for the grace of God go I” .

  23. MB July 20, 2014 at 4:22 pm #

    Here’s a favorite of mine: “God must have bigger plans for you.”

    First, the person is making the (inaccurate) assumption that I believe there’s a god.

    Second, if by fluke there happens to be a divine plan which is to see how much the human body can tolerate, THEN STOP ALREADY!! I have the results!

  24. Sandy July 20, 2014 at 7:56 pm #

    My fave is “God never gives us any more than we can handle”. Or “Its all part of God’s plan.”

    Lets see his definition of “handle” cuz some days…..

    And he “PLANNED” on giving me MS? Nice.

  25. Betty July 21, 2014 at 6:56 am #

    Try these.
    “It is what it is”. (or it isn’t)
    “On my worst day I’m glad I’m me”.